Author: Lauren Sormani, NAF Support Group Leader
I was diagnosed with Spinocerebellar Ataxia Type 8 in 2017 when I was 21 years old. A few months after my diagnosis I found a support group near me and I attended. I was thrilled to meet other people with Ataxia, but what I was really looking for was people my age (under 30) with Ataxia. I am now a 24 year old law student and I will be attending my 3rd Annual Ataxia Conference this year.
My First AAC
I attended my first AAC in Philadelphia in 2018, about 8 months after my diagnosis. After I registered, I immediately made my hotel reservation, booked my train ticket, and started counting down the days. Attending the AAC was one of the best decisions I have made in my Ataxia journey. I finally met other people with Ataxia who were my age, and they have become some of my closest friends.
The first year or so of my diagnosis, I was not completely sure what Ataxia was and what it meant for me and my future. Listening to all of the presenters (including many from my own team at Johns Hopkins) gave me concrete answers and information about Ataxia research, living with Ataxia, and my most favorite, exercises that benefit Ataxia patients.
After a diagnosis, people jump to the internet to read anything and everything they can about their condition. Much of that information may end up being irrelevant or incorrect. But at the AAC, the information about Ataxia that is presented comes from neurologists, therapists, researchers, and more who are renowned in their field. Many have focused their careers on Ataxia.
Birds of a Feather and Under 30 with Ataxia
One of my most favorite parts of the conference is the Birds of a Feather sessions. These are small group sessions that are created based upon criteria mentioned in the title. For example, there is a Birds of a Feather session for SCA3, so anyone with SCA3 attends that session. There are a variety of sessions you can attend, but be sure to read the criteria!
On the final day of my first conference in 2018, the Under 30 with Ataxia Birds of a Feather Group met. There were not very many of us, but were certainly had a lot to talk about—talking from 2pm to almost 6pm. The longest the Under 30 group has ever lasted. I was elated to be able to give advice to others, especially those who are younger than me, about my tips and tricks for navigating high school and college with Ataxia, and I know others were as well. Many gained new friends, including myself. We all agreed that there is a need for more involvement from the younger generation of people living with Ataxia. The Under 30 with Ataxia Facebook Support Group* was created shortly after.
Navigating high school and college with Ataxia was no walk in the park. The entire time I was forging my path blind—I did not know anyone who had recently paved that path before me. Over the years I came up with my own modifications for most of college life. While my friends are amazing and very supportive, it was hard for them to understand what I was going through and how to best help me. After all, how could they if they were not living with Ataxia themselves? Looking back over the last few years, my life would have been immensely easier if I had other college-aged Ataxians to bounce ideas off of or to ask for advice in certain social situations. While I am extremely grateful for the information I have gathered from all the Ataxians I have met, I felt there was a gap that needed to be filled.
Under 30 Meet-Up
For the first time this year we will be having an under 30 meet-up the evening before the conference begins, on Thursday, March 5th from 8-9:30pm! The purpose of this meetup is so people have a chance to meet and become friends before the conference begins. There is down time between and after the sessions during the conference, and this time can be used to hang out with new friends, so we want to make sure you meet before the conference begins!
Will you be at the conference? Email lori@ataxia.org to sign up to attend!
About the Under 30 with Ataxia Facebook Group
* The only two criteria for involvement in this group is (1) you must have Ataxia and (2) you must be between the ages of 16 and 30.
*If you are a parent of a person under 30 with Ataxia, you do not qualify to join the group. We’d be happy for your son/daughter to join though! We love you parents! But we need a space to talk freely about the issues that we face. Thank you for understanding!
Questions about the group? Contact Lauren at lasormani@gmail.com.
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